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Do you ask your autistic loved one or friend how it feels to be autistic? If not, why not?

Do you ask your autistic loved one or friend how it feels to be autistic? If not, why not?

I get asked all the time how it feels to be autistic – my friends and family are all super interested to get some kind of perspective, and see things from my point of view.

That’s not true. Of course it’s not. They couldn’t give a monkey’s.

It would probably be like me asking my left-handed / tall / visually-impaired / frightfully-clever friends how it feels to be THEM or how it affects their day to day life. Once the fact that they’re left-handed / tall / visually-impaired / frightfully-clever has been established, there’s probably no need to re-visit it.
So, with you being so tall an’ all, how did you feel when that really tall politician got into office?” I can see how that line of conversation would be surplus to requirements.

But somehow one’s autism does seem to warrant more discussion. If I can elaborate, I think what friends and family are theorising, once their loved one has disclosed their autism or Asperger’s diagnosis, is that there’s now a reason why the loved one is quirky / likes their own space / ran out of the driving examiner’s office that time / doesn’t like their fish and chips touching, etc.

A nice, tidy label that explains things, but doesn’t warrant further investigation. Like being told you have unmanageable hair and a double crown.

“Autism can make one feel dis-ordered / less ordered / requiring order…”

This is rarely true however. We’re likely to be talking about adults here (in the context of someone telling a friend/family member about their autism diagnosis), and an autistic adult who’s gained a diagnosis later in life WILL have been greatly affected by their autism. (And I use that phrase deliberately, as while I know that autism is more politically correct, frankly, autism can make one feel dis-ordered / less ordered / requiring order.)

So, can I implore friends and families of recently diagnosed autists not to ‘package up’ and hide away conversations about how the loved one’s autism is affecting them? Essentially, if one has autism, it is (and has always been) a filter through which their life is viewed. A pair of glasses, or a window frame if you will, through which we (autists, or autistic people) see and process everything. That work decision we made? It was made through an autism lens. The new jacket we bought? Selected through an autism lens. That big social family gathering we endured that left us exhausted, with a social hangover? Yep, it was endured through an autism lens. And the filtering and processing of past events; deaths, births, marriages, work-events, friendships, fall-outs, you name it – all tackled with this strange, other-worldly filter in place.

A new autism diagnosis isn’t just a plaster or band aid that sticks together a few health issues. For example, someone may share with their family that the health issue they were experiencing was a result of a mineral deficiency – and a diagnosis and a supplement rectifies it. Or maybe they couldn’t perform a particular physical movement because of an old injury – and a diagnosis and physio session rectifies it. An autism diagnosis isn’t like that. It’s life changing and monumental.

There’s no harm in asking your autistic friend or loved one how they feel about their autism diagnosis periodically – whether it’s changed what they do, where they work, how they manage their self-care, how it affected them as a child, and how it tallies with past experiences that the person found challenging, because of their autism and the way it coloured their experiences.

There’s every chance that the conversation will be appreciated! (Just make it on email, schedule any phone calls in a diary in triplicate, or ensure it takes place in a quiet, subtly lit place with just you two present…!)

A little disclaimer — here at we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. Our book ‘Autism from A to Z’ is now widely available – purchase here.

Check out our blog on adult autism assessment HERE to gain even more perspective about your loved once’s possible experience, if they’ve been recently diagnosed as autistic. Read more about our curator HERE.